Carers' Experiences of Dementia

 

Patti 62, Part Time Store Manager and cares for her mother, Margaret, 86

Mum used to take naps during the day and then she’d have trouble sleeping through the night. Every night she’d wake me up and I would stay up with her because I was worried about what would happen if she was left alone. I was exhausted! I just didn’t know what to do.

My sister-in-law who is a nurse said that I should try and keep mum busy during the day to try to stop her napping. So I started taking mum shopping with me and going down to the park in the afternoon. Mum really likes going to the park now. It’s our regular time together where we just both relax and wander. It has got her interested in gardening again too which is great. These changes have really helped with mum’s sleep. She only occasionally wakes up in the night so that means I get to sleep too.
 

 

Elena 16, full time student and helps care for her Grandmother Jianli, 79.

If Grandma wakes up in the middle of the night she gets really confused about who we are and where she is. We talk to her in Chinese and reintroduce ourselves to her and this helps calm her down. Mum put lots of family pictures in Grandma’s room and also her favorite reading chair and her special table that she’s had forever.

If she wakes up, we turn on a little light near her reading chair so she can see all of her things and she knows where she is. She usually goes back to sleep again really quickly.
 

 

Angelo 72, retired and cares for his wife Maria 67

Maria always gets up and wanders around the house while I sleep. One night I woke up and found her sitting outside on the wet grass. That made me worry. I felt like I couldn’t keep her safe anymore. I started thinking about nursing homes for her.

I’ve come up with some great ideas how to keep Maria safe and help her sleep. Every night I turn on nightlights in the hallway leading to the toilet. Just really dim ones so they don’t keep us up at night. We used to use them for the grandkids when they slept over so they could find their own way to the bathroom and back by themselves. It helps Maria in the same way.

I also put bells on the doors leading outside so I will wake up if she opens them. Maria still wanders every now and then but now, she often comes back to bed again. I feel better because I know I can keep her safe at home with me.

 
 
 
 

Panna 54, full time dental hygienist and cares for her husband Suran 68.

When Suran started having problems falling asleep it really upset our lives. He would get frustrated and irritable early in the early evening and stay that way till past our bedtime. The doctor said he could be “sundowning” and that having a calming routine before bed could help. We started a routine of turning off the TV earlier, having a warm bath and a herbal tea.

This has really helped with Suran’s irritability. I’ve also started singing old Hindi songs that I know Suran likes. He’s very traditional. I also sing Hindi lullabies close to bedtime and this works really well. We aren’t 100% perfect, but we are always finding new ways to make our life together work and to stay loving.
 

 
 
 

Ciara 42, full time mother of 2 and cares for her father Maurice 67.

The one thing I still find hard about dad’s Alzheimer’s is when he gets confused and just not himself at night. What has been really helpful is getting a bit of support and advice from other people in the same situation as me. I joined a caregivers support group and it has been great. I get a lot of information on Alzheimer’s and really helpful tips from the other carers. I found out that Dad’s confusion is probably “sundowning” and that it is quite common in people with dementia.

Now I have ways to calm Dad down and get him to sleep at night. We know what to do as soon as he starts acting out of sorts. My support group also put me in touch with community services that help me in really practical ways. I have two teenage boys to look after as well, so I know that sometimes I just need a bit of help from outside the family.
 

Dementia Support Organisations

Healthcare teams that can provide

you with support:

Alzheimer’s Australia
http://www.fightdementia.org.au
Phone: 1800 100 500

(National Dementia Helpline- 24hrs)
The Dementia Centre
http://www.dementiacentre.com.au
Phone: 1300 426 666

Dementia Behaviour Management Advisory Service
http://www.dbmas.org.au
Phone: 1800 699 799

(24 hour phone support)

My Aged Care

Australian Government: Department of Social Services
http://www.myagedcare.gov.au 
Phone: 1800 200 422
Department of Veteran Affairs
http://www.dva.gov.au

Commonwealth Respite and Carelink Centres
http://www9.health.gov.au
Phone: 1800 059 059

Carers NSW
http://www.carersnsw.org.au
Phone: 1800 242 636

Commonwealth Carer Resource Centres
http://ccdn.com.au
1800 242 636